The Reflection Room: Shifting from death-avoiding to death-discussing

P. Holyoke & K. Oikonen • RSD5, Oct. 14, 2016
Karen Oikonen
Designer Researcher
@KarenOikonen
Early obeservations from a
year-long research project
Paul Holyoke
Director, Saint Elizabeth Research Centre
@SEHCResearch
The Reflection Room
Shifting from death-avoiding
to death-discussing

There’s nothing
more we can do…
What are our
options?
It’s very difficult to make end of life
decisions in a time of crisis

Only 25% of Canadians over age 30
have completed plans for end of life
(Environics Research Group, 2013)

70% of people die in hospital when over
50% want to die at home
(Gauvin, Abelson & Lavis, 2013; Environics Research Group, 2013)

Choice at end of life depends on our ability
to talk about death and dying
Canadians don’t talk about
death and dying

Fear and denial are very real
aspects of how Canadians relate
to dying and death
(Arnup, 2013)
Death
denying
Death
accepting
Death
discussing

“Medicalization of death”
Created an institutional preference to be sick and
curable rather than dying and incurable
Limited exposure to death and the dying process
H
(Arnup, 2013)

Both
work
Son has
a new &
demanding
job
Son with spouse
Son
Daughter + Spouse
+
Daughter with
spouse & child
(2 years old)
In the same
province
(2 hr flight or
16 hrs by car)
In a different
province
(1.5 hr flight or
9 hrs by car)
In the
same city
3 hour drive
in the country
Same country,
4 hour flight
Same country,
4 hour flight 20 minutes
away
1.5 hour
drive
2 hour
drive
An hour
away,
child has
ADHD
3 hour
drive
In the
same city
Spouse’s family
live in the
same city
Overseas
& travels
internationally
for work
Live in a different
country
(4.5 hr flight or
34 hour by car)
+
Daughter with
spouse & child
(8 years old)
+
Childcare
Both
parents
work Both
work
Travels
a lot for
work
Spouse
has a new job
with little
flexibility
Son with spouse
& 1 child
+
Childcare
Both
parents
work
One parent
runs their
own business
Mother (had a stroke
last year) & Father
Son with spouse
& 2 children
(1 & 5 years old)
+
+
Patient &
Local Caregiver
Childcare
Both
parents
work
Spouse
also has
an ill parent
in a different
city
Son with spouse
& 2 children
(10 & 14 years old)
+
Daycare
Spouse
works from
home
Both parents
work
Son with spouse
& 3 children
(3, 7 & 9 years old)
+Childcare
Both
parents
work
Spouse
is also
persuing an
advanced
degree
New spouses
Daughter
Grad
student
Mother/Patient
(divorced)
Father + spouse
(divorced &
remarried)
Family structures are changing

Research suggests that people who
are exposed to dying are more open
to discussing it.
(Goodridge, Quinlan, Venne, Hunter & Surtees, 2013)
(Carr & Khodyakov, 2007)
Death
denying
Death
accepting
Death
discussing

New approaches to support
discussion and planning
Death
denying
Death
accepting
Death
discussing

Human beings are storytellers
(Sanders & Stappers, 2012)

Schenker Y, Dew MA, Reynolds CF, Arnold RM, Tiver GA, Barnato AE: Development of a post–intensive care unit storytelling intervention for sur-
rogates involved in decisions to limit life-sustaining treatment. Palliative and Supportive Care 2015, 13(03):451-463
Storytelling effects
Storytelling
Emotional disclosure
Cognitive processing
Improved mental health
outcomes (depression,
anxiety, PTSD, persistent
complex bereavement
disorder)
Social connections

It is more likely that
people will discuss dying
and death if they are
exposed to the reality of
death and dying through
experience.
Hearing or reading true
stories about serious
medical conditions can
increase the familiarity that
appears to be a significant
catalyst to discussions
about end of life.
(Mazanderani, Locock & Powell, 2013)
(Ziebland & Wyke, 2012)
Stories can be
a catalyst to
discussion about
end of life.

Spirituality Research + Participatory Art
(beforeidie.com, Candy Chang)
+

How might we use human-centred
design and qualitative research to go
from being a death-denying society
to a death-discussing society?

Canadian Hospice Palliative Care Conference

The invitation to share a story

The Reflection Wall

Expanding the project
Planning points of intervention

Within Healthcare
Hospice Palliative Care
Ontario Conference St. Paul’s Hospital, Sasaktoon
Heart House Hospice, Mississauga

Public Spaces
Death Perceptions Exhibit, Wellington County Museum
Tansley Village Retirement Home, Burlington
Art Gallery of Burlington

Online @ thereflectionroom.ca

200shared stories
1,100visitors to the website

What have we learned so far?

Relationships are at the
centre of the stories

My reflection

Experiences remain
in our hearts
Human experiences and
“moments in time”

Expressions of gratitude & regret
Promises to do better
Sharing learnings

Death is about life

Appreciation for the
invitation to reflect

People have complex lives
Embedded in complex social networks
Healthcare professionals work
within a complex system

Society that is struggling with
how, when and with whom we talk
about dying and death
Where are the leverage points?

Read some of the reflections
in the Reflection Room90%
I found reading the other pages on
the wall put me more at ease about
some of my own reflections that
I have in my head. It allowed me to
see that most of my reflections were
not way out there.
Death
denying
Death
accepting
Death
discussing

Said the experience made them a bit,
or a lot, more comfortable thinking
about dying and death
Said the experience made them a bit,
or a lot, more likely to talk to family
and/or friends about dying and death
74%
78%
Death
denying
Death
accepting
Death
discussing

Of people that did not read
reflections or did not write a reflection,
‘not enough time, maybe later’
was indicated as the primary reason.
Death
denying
Death
accepting
Death
discussing

Physical space can open emotional space.
Time = ‘space’
People often visited more than once.
Death
denying
Death
accepting
Death
discussing

There are times and places where
the leap is too great.
It’s easy to not accept the invitation.
Death
denying
Death
accepting
Death
discussing

Two leverage points are emerging
The creation of ‘space’
The sharing of the human experience
Death
denying
Death
accepting
Death
discussing

Further look at ‘time’ and ‘space’
What do we need to know about
creating space within our complex
lives that acknowledges the
complexity, and commonality,
of individual experiences?

Our next steps
20 installations between now
and June 2017
Death
denying
Death
accepting
Death
discussing

Better chance of dying where
we want, how we want and with
whom we want
There’s nothing
more we can do…
Let’s talk about
what we want…
What are our
options?
Health crisisBefore diagonsis

We invite you to take a moment
to reflect on your own experiences
with dying and death.
Paul Holyoke
PaulHolyoke@saintelizabeth.com
@SEHCResearch
Karen Oikonen
KarenOikonen@saintelizabeth.com
@KarenOikonen
thereflectionroom.ca
Thank you.

The Reflection Room is supported by
Saint Elizabeth Health Care
saintelizabeth.com

The Reflection Room: Shifting from death-avoiding to death-discussing

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The Reflection Room: Shifting from death-avoiding to death-discussing